Last Friday she had her 2nd endoscopy to check her esophagus and see if the white blood cells from the eosinophilic esophagitis had dissipated with her very strict elimination diet, which had us eliminate 23 different food items out of her diet due to allergy or sensitivity.
here's the background
In July Cailyn had an endoscopy and impedance test which I requested since she's always had reflux. I wanted to see if her esophagus was getting damaged and if she was on enough meds for the reflux. So ends up her reflux was ok but she was diagnosed with eosinophilic esophagitis. This was very upsetting and we engaged in very involved patch testing for food allergies and found 23 items she reacted to.
So the plan was to eliminate those 23 things from her diet for 3 months and then do another endoscopy to see if the white blood cells/eosinophils had cleared up. Yesterday we met with the EOE team (GI, Allergist, Dietitian) to find out the results. Ends up the elimination diet did nothing for Cailyn and there was no change. This was frustrating since we had cut so much out of her diet.
So we were given a few options and the one I think we'd like to try is to do is a steroid (Budesonide and the dose would be 1/2 tsp compounded at 1mg/5ml twice a day and taken orally) taken for 3 months with a follow up endoscopy at that time. Usually this steroid is inhaled for asthma but it has been shown to fix EOE as well. Once she's on the steroid we can go back to eating anything she was eating before except milk and egg since we have seen very severe reactions to both of those.
She truly is my 1% baby. 1% chance she'll have a specific reaction to a med, 1% chance of a diagnosis etc. Not sure if it's a 1% chance the elimination diet would not work, but I wouldn't be surprised.
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